This is all very new to me as just diagnosed, but any advice on how to go about the party season?! Iv always enjoyed going on and indulging in lots of food and drink so it's pretty sad to think I can't do that any more!! I'm particularly interested if there's any of you guys out there that have had PBC a long time and have kept the condition stable at a lower stage what approach you've taken? Thanks
Christmas Festivities : This is all very new... - PBC Foundation
Christmas Festivities
Hi, I have had PBC for 17 years now. I too used to enjoy and overindulge over the festive season. I can no longer drink because it doesn't take too much for me to feel drunk and quite honestly ill. Regarding the food, I eat what I want and how much I want as it makes no difference to me personally. I don't party that often now because the fatigue has been my worst symptom. My numbers have reduced dramatically and stabilised over the past couple of years to acceptable lower levels.
My advice to you is enjoy the festivities but listen to your body. It will tell you when you are putting pressure on it.
Have a fantastic Christmas and New Year.๐๐๐
Hi I've had BPC for 16yrs and feel extremely good only meds I take is Urso tablets. The first year I was diagnosed I did not drink for a year but gradually as years have gone by I now drink in moderation (I can't drink much as it make me very tired). Eating everything and enjoying life. Be positive and push forward. Enjoy Christmas and New year. X
Everyone is different, I can't drink at all it makes me so Ill. I can't eat fatty stuff, it makes me sleep whilst it deals with it & my fatigue is horrendous. But I still enjoy every minute. I do what my body tells me I can & you soon get used to it . Xxx
I don't drink anymore but haven't changed my eating habits. Don't party as I feel to tired but depends on your energy levels really.
I've had it for around 10 years and I have cut back on what I drink but if it's a party i do what I want with just a hint of common sense and I don't eat fatty foods, after that keep taking the meds.
It hasn't changed my life that much and the pbc has been very stable for years.
Merry Christmas
Emer1986,
Drinking parties are over rated, especially for us with pbc. Go ahead and fit in with heavy drinking but watch your enzymes go up and your pbc progress a stage or 2. 8 oz alcohol or less per week, period. Find things to do that doesn't include heavy drinking, if someone insists you have a drink with them and you've told them you have pbc, pour 2/3 out and fill your glass with water. Your liver and blood tests will thank you! Good luck!
: )
Thanks. I wouldn't be a massive drinker or even go out a whole pile! Those days of college partying are long gone! One or two every once in a while would be nice but cutting it out wouldn't bother me hugely! Thanks everyone for your feedback ๐
Absolute rubbish. Your PBC is not going to progress a stage or 2 because you drink a lot of alcohol. There is NO information to back this up, absolutely none. You should be ashamed of yourself for spreading such ridiculous untruths on a site such as this. I am shocked beyond belief!!!!!
Debbiem40, I'm so sorry, my doctor told me this info about not drinking, so did my brother who has a doctorate in pharmaceutical research and urology. Did your doctor tell you something different? We all need to know if your doctor told you it's ok to drink alcohol a lot. We are in this together. I'm so sorry if I offended you. I hope you can forgive.
In the whole 13 years of being diagnosed nobody has ever told me to never drink alcohol. If you're at the cirrhosis stage then yes, its probably not a good idea, but to say that having a drink would progress you a stage or 2 is ludicrous!
If I read it correctly, Jlruggie said 'heavy drinking' and did not say 'a drink'. Jlruggie's post was well meant I felt and had a serious point underneath the banter. The liver has to process alcohol like it does any other poison and if the liver function is in any way compromised, it will struggle and there will be knock-on effects. Huge difference between having 1 or 2 drinks and heavy drinking.
Jlruggie, your suggestion about tipping out the drink & putting in water is great. Done that several times when you don't want to be a kill-joy but also don't want to feel ill.
Future Learn runs a great liver course from time to time, if anyone's interested in learning a little more. Really worth doing and Future Learn doesn't cost anything!
I quote " Find things to do that doesn't include heavy drinking, if someone insists you have a drink with them and you've told them you have pbc, pour 2/3 out and fill your glass with water. Your liver and blood tests will thank you! Good luck!"
If that's not putting the fear of god into people I don't know what is! If you have cirrhosis then I guess its not a good idea to drink, but if you don't there is nothing to say you shouldn't.
Badpiglet,
Cool fun nickname. I'll check out Future learn for liver course, sounds interesting! Hey wanna come over for happy hour? Hahahaha, jus kiddin
: )
Debbiem40,
I'm trying to help. I'm sorry if I mis spoke. In 17 years since my pbc diagnoses, 3 doctors and my dr brother told me not to drink. 0ne doctor ssid 4-8 oz per week will be ok. I love to drink but I kept my consumption down to 4 oz per week and my enzymes decreased. We need to report what we find individually here. It's interesting you have found your enzymes don't increase when you drink. Thanks for reporting that.
Peace
I never said they hadn't increased, I really have no idea if they do or don't as I don't take blood tests every time I have a drink - which isn't all that often in all honesty - I said it was irresponsible of you to say that the disease would progress a stage if you had a lot to drink.
Debbiem40,
I'm trying to help. I drank heavily 2 years ago, all 3 enzymes doubled and tripled the top of the normal range. Decreased drinking to 4 oz per wee last year, enzymes are now only a few points above top of normal range. My hepatologist pbc specialist ordered monthly blood tests. last year when she saw enzymes so high and me reporting my high alcohol consumption. Also with decrease in drinking my MRI showed I went from stage 2-3 to a solid stage 2 pbc disease progression.
Hug
I find if I have a few drinks(lite beer). I actually have a lot of energy. As long as I don't over do it I feel great the next day. I think your body will tell you what you can and can't do. My doctor who is one of the best in USA said to live your life as you normally would.
There is absolutely no reason not to drink and enjoy yourself! I have been diagnosed for nearly 14 years and its never stopped me!!!!
Everyone needs to do what they want but it is a medical fact that heavy drinking damages your liver regardless of wether you have PBC or not !!!! Drinking with a liver that has a disease is in my opinion a crazy thing to do. You may think it's not making things worse but it will catch up with you in the end. If you can't live without a drink then maybe you have a problem !!!!!!!!
Great answer. Sounds like they have a problem.
Merry Christmas! When I was diagnosed 10 years ago, my gastro told me I could have 1 small drink a year, maybe 4 oz of wine on a special occasion, he said there is no 'good' or 'safe' amount of alcohol consumption for anyone with liver disease. In these past 10 years, I usually tell the host or hostess I don't care to drink that night, I'm on an antibiotic, I'm the designated driver, or I let them give me a small wineglass that I set down somewhere untouched. On very rare occasions I will have a small drink ( beer or wine, no hard liquor). It's no ones business why you don't drink -- I don't tell anyone that I have PBC. The really hard part is eating sensibly & keeping your weight at a proper level! Enjoy your holidays, there is a bit of a learning curve to this liver disease. Happy holidays!
Goodness, this has caused a debate. I was diagnosed 3 years ago and have seen my Consultant yearly - he just says 'stick within Government guidelines for alcohol consumption' but it has been pointed out to me that GP/specialists will say that to everyone! (even those who don't have illness). You would think our PBC Consultants would be decisive and say DON'T DRINK at all, infact they don't seem to offer much advice about diet and lifestyle. I've read a book recently about helping auto-immune through diet, this was recommended to me by another member, not the Consultant, from what I can understand from this site, it's the Specialists, those that really know the facts, that simply tell us to 'go away and get on with your life', and for some that will mean a few drinks on a special occasion? Whilst I'm sure none of us want to progress our condition unnecessarily, it's likely we had PBC for years before diagnosis and were blissfully unaware, eating and drinking what we liked. As PBC is an auto immune condition and is not CAUSED by alcohol consumption, then how is it progressed by alcohol?? Hey plus, you could get run over by a bus tomorrow! Cheers Debbiem40 ;-)))) xx
My doc also has said that drinking in moderation is ok but not to go beyond the weekly recommended limit for women which is 7 drinks per week as I agree they say to all. Also said it's not a good idea to drink all 7 at the same time! I've had long discussions about this and believe that the real concern for the doctor comes in when someone isn't able to have 1 or 2 drinks and stop. There are many of us who have built up a pretty good tolerance for alcohol over the years. I was one who definitely had to consciously limit my intake as my social circle tends to be 'very social'! I now limit myself to 2 drinks at any time - most of the time it works! My doctors advice to this was to be honest with myself. If I can't limit intake there's a potential problem that can have negative effects as it can for all. Having a liver disease, it just seems like common sense to not overdo with things that we know are toxic to the liver and difficult to process. So, it seems like the only problem with having a drink or two is when you aren't able to just have a drink or two!
Cheers and Merry Christmas!
I have had PBC for six years now and I eat what I want and I have a drink occasionally 2 halfs of shandy or a small glass of wine, per week, I take three Urso tablets and many more tablets for my Scleroderma 20 plus per day, and I was told my condition has not elevated any more than it was six years ago. So enjoy your Christmas and new year just be sensible with the alcohol.